Lucy and Ethel

Practicing gratefulness every day is a challenge sometimes.  Not because I’m not grateful for what I have, because I am.  It’s forgetting. Forgetting to pray before a meal, no matter how it is said, or even thought.  Forgetting to say “thank you” when a request has been filled to your liking (I think all prayers are answered….just not the answers we wanted sometimes) and forgetting that regardless of my challenges, I do have something to offer, regardless of how small I think that thing is, compared to people who make a difference on a grander scale.  Being grateful to those who point it out to me, and not dismissing them as just “being nice” to me.

So after the big storm back east (for me back east) and my aggravation and not getting coverage because I so rarely watch television I have very limited service, I had a bunch of feelings and questions, as did millions of others.  Being grateful for being safe (for now) makes me feel a tad guilty, until I remember what I face every day.  It does bring chills to me to think what would happen in a disaster and not having access to my medication.  I would imagine millions have the same issue.

I had to make an appointment with my pain doctor because he does need to see me now that I’m on a new regiment.  I get that, I really do.  But I’m still mighty scared of the drive out there; 45 minutes in good traffic.  I make the appointment late morning to minimize the heavy traffic issue, but one never knows.  Leave late enough to avoid morning rush and hopefully, be done before evening rush.  My helper will to it for me, though she isn’t supposed to.  BUT, it is on her day off, so it’s none of their business what she does.  I’ll pay her out of pocket.  I could take a taxi, but I’d rather have her there with me if possible. 

Pam and I were in a pet store the other day, and I was looking for Oliver’s flavor of wet food and we kept moving the cans around and jabbering frantically, trying to find it.  I finally turned to her and said, “Man, we’re like Lucy and Ethel” It kind of stuck.  She’s a dear.

The pain is bad again today, probably because it’s her day off and I decided I wanted to get the heck out of Dodge on my own, so I went to the store, than I had to stop for the mail, then there was two notices that something was at the office (one of them very heavy) so I was moving way too fast and now I’m down for the count, reading.  But it’s not a great read and I guessed what was going on early on….pretty sure I’m right, based on the last chapter.  I hate that.

This was poorly written but I'm not up to editing

Blessings

The Hummingbirds

I purchased a hummingbird feeder yesterday, made my own food (just sugar water…1 part sugar to 4 parts water…boiled and cooled, no color added)           and hung it on my deck.  There is just one hummingbird who has found it and keeps coming back every 20 minutes or so.  He’ll drink me out of it by the end of the weekend if this rate keeps up.  Don’t know where his buddies are, or if he has them this late in the year.  I just kept seeing them flitting around and felt bad for the critters….not many flowers around anymore.

I haven’t been up to writing for a number of reasons.  Pain, of course, but mostly depression at the state of this country.  I’m scared to death of what will happen if a certain someone wins this election.  If social security is dismantled, I have no idea what I’ll do.  My drugs are a fortune.  Not that they’re working that well; I am pretty much housebound these days due to the pain.

It amazes me that things like global warming are just off the table now.  I’m guessing Obama has been advised not to talk about it because no one believes it and its untouchable.  And Romney thinks it doesn’t exist and neither do his supporters.    I can understand the super-rich supporting him.  But the poor?  I scratch my head in wonder.  And his family has an “interest” in a company that makes the voting and polling machines.  My theory is that this is why his “numbers are up”…..so it won’t look like a hat trick come election day.   An instant replay of 2004 and probably 2000.  We just never learn.

And we, the sick, are paying the price in spades.  I was so angry I almost didn’t vote at all.  But that’s not a good idea.   Even if O wins the popular vote but loses the electoral (which technically, should not happen, but does) at least we’ll know not everyone is a raving lunatic.  Romney might look more presidential, but he is a born again elitist who inherited his wealth, made himself wealthier by firing people and hiding his billions, and his wife, who is more of an elitist than he is, makes remarks like “you people” when referring to anyone not in the one percent.

So, come January, without a miracle, the super wealthy will OWN America.  They do now, anyway.  What’s sad?  We are EXACTLY like the countries we profess to hate.  The ones we want to bring “democracy” to….if a candidate in a foreign country had an investment in the voting machines, America would laugh.  If Obama had one, he’d be skinned alive.  But for some reason, Romney gets a pass.

What does that tell you?

Jump!

Time sure does fly when you’ve stopped writing.   On Saturday, I was reading Huffington Post and came across this article about this daredevil, Felix Baumgartner who was just about to make a free-fall jump from the stratosphere.  I clicked on it minutes before they hoisted him up in a capsule by helium balloon, with cameras everywhere and a NASA like situation on the ground.  They said it would be a two hour ascend, and I thought, okay, I’ll read until he jumps.

But I got pulled into it and I’m glad I did.  It was incredible to watch.  There are lots of sites online that have the simulation of it, and it looks rather cheesy compared to watching it live, streaming.  I guess there were over 14 million people viewing it from sites like YouTube.  Don’t know how everyone knew about it.  Of course, I don’t pay attention to that kind of thing.  But I’m glad I did Saturday.  I was reading later that he had to overcome claustrophobia to do this….being in that enclosed capsule for two hours was a challenge.  I was telling my healer that he had a fear to overcome and before I could get into it, she quipped “Fear of heights?”  I thought that was pretty funny.  He jumped at 124,000 feet.  Three times higher than a jet flies.  It was unreal to watch in real time, though with a 20 second delay in the event of catastrophe.  Yikes.  Find it online and watch the jump….you can actually see as he tumbles head over heels for the first 30 seconds….at over 700 miles an hour….breaking the sound barrier with his body.   And it was 67 years to the day that Chuck Yeager did it in a plane.

On Friday, I started using morphine as my breakthrough.  Although it’s not as strong as Diladid, it seems to be working better.  Or I’m just having a couple good days; that does happen, though not often.  However, I’m thinking positively and the pain doc is sending me a script for a month’s supply.  She only sent me enough for a week initially.  And my Diladid is way past the “throw away” date; I never noticed.  I rarely used it back when she started sending scripts for it so I had this supply, but it might be that it didn’t work because it was outdated.  Still, I’m giving this the old college try so we shall see.

One of the NF chapters sent me this notice that the show NCIS, which I’ve never watched (along with almost everything else….except for Criminal Minds and Bones), is doing an episode with NF in the story….can’t remember the date…end of this month, I think.  So keep an eye out.

I’m very boring today.

Goody Goody

I am still being “tweaked” drug wise.  The Diladid is like taking a tic tac (which my nurse reminds me is getting old, description wise....well, she said I say it all the time…which is true) they have switched me, for a week anyway, to Morphine.  So I’m not morphing to morphine.

Despite the scary end-stage-life name, Morphine is actually less of a narcotic than Diladid, in terms of the dosage I’m now on.  But in some cases, it breaks through the pain receptors better.  Who knew?   She said “I know you go online and read about this stuff so I’m telling you, that’s what you’ll find”  I told her I already knew that (I did….Ted told me) and she chuckled.

So it came in the mail yesterday (thank heaven…my patch prescription too), I dropped it off at the pharmacy and got it today.  I knew there would be a 24 hour lag because they keep almost none of this stuff on hand except for a dose or two.  Can’t blame them.  Anyway….I got it and I’ve been in a fair amount of pain today so I popped one while Pam was still here, about two hours ago.  I actually got some relief.  And I just got out of the shower, having changed my patch.  Not that I’m complaining about this, but the glue on those things is next to impossible to scrub off.  Outlines of patches in four places.  I get most of it, but always find more.

Anyway, the dosage is lower too, so we shall see.  But I definitely would like to do more than lay on my couch.  Even going to the store without being afraid I’ll get stuck somewhere and be in agony.  She (my nurse) said “You have to remember how you were a little over a month ago compared to how you are now”  That’s true, but I also remember how I was a year ago…or two years ago….and yes, EVERYONE has aches and pains as they age.  This isn’t aches and pains.  We passed that bar-b-que ages ago.

But, I must soldier on….and hopefully, this might be the short term solution to a long term issue.  Things only work for short periods of time, but I take what I can get.  My bowels have been up and down, but my appetite is much better, which is good.

More Than One Way To Skin A Near Death Experience

I used to really like Katy Couric, but after tuning into her show today (why, I don’t know; I rarely have the TV on) I’m not so sure about her anymore.  I realize she has producers to answer to, but she has clout, right?

Today’s lineup were two people who had a near death experience (note near: dead, or not?) and a young woman prodigy painter with visions.  I am very, very open to these conversations due to my own other worldly experiences, so that’s not the issue.

The issue is, all three of these people were on the Christian side of the scoreboard.  Not that I’m keeping score,  but the Almighty, if He loves EVERYONE as they all claimed, should have equal representation, don’t you think? How about an Islamic guest?  Or Jews?  And all the hundreds of other religions out there?  I know there are people who have had near death experiences who DID NOT meet up with Jesus, as this crew claimed to have done.  I know because I actually looked it up.  Different Strokes, right?

It drives me INSANE that this view was the only one addressed.  People’s experiences with death are largely based on what they believe, though the young boy had one at three or four with no “preconceptions” said his PREACHER father.  Yeah.  Right.  Okay, then.

Look, it may have happened the way the declared, it may not have.  I wasn’t there.  I know my own experience of helping someone to the other side was as real as it gets, complete with bright light.  I wrote about on this very blog…”First Encounter” if you’re interested.  The thing is, my experience happened way before I started taking painkillers; in fact, I took nothing more than aspirin back then.  I didn’t die and come back (thought I’d like to die and stay dead much of the time now that I’ve been in pain for 20 years).   I wish G-d would give me a hint as to why I can’t leave.  Sigh.

I have this video somewhere else too....it fits again

I do wonder how much of those experiences are caused by a shutting down of the brain and conjuring of memories, or something else altogether….like maybe it’s real….but real or not, I do not believe I’m going to Hell because I haven’t accepted Jesus.  I talk to G-d all the time.  He told me.  Honest.  I actually do mean that, in spite of my nippy attitude right now.

Pain Receptors Full

I didn't sleep much last night and am in agony this morning.  My pain receptors are full so nothing is really working very well and the withdrawal is still keeping me shivering in 70 degree weather; very unseasonable for Seattle but the rains come back this week.

I don’t know what to do anymore.  Lying flat my whole life seems like no life and I worry I am heading toward the abyss again.  It’s so damn inviting.  The one good thing about being off the methadone (well, more than one) is that I’m remembering my dreams, weird though they are.   I so want to be done with this life of pain.  I keep telling myself I’m here for a reason, even though I don’t know what that reason is, but when you live in this kind of pain 24/7 you start thinking it’s a mass delusion (having a “reason” to be here).  I know I’ve had a lot of unworldly experiences that sort of confirm there is much more to life than what is in front of us, but times like these, when my legs are on fire and the drugs do no good at all, I just kind of think, the hell with it, get me a gun.

But of course, in the end, I can’t do that.  Not yet anyway.  Not ready.  You’d think I would be, but I’m not.  What I want is a miracle.  I want to wake up and feel nothing but the average aches and pains of a 59 year old woman.  I want to feel the ground beneath my feet instead of it feeling like I’m walking on rocks, even with socks on.  I want to enjoy the sunshine, to work, to travel, etc.  I want normal, whatever that is.  I just know that what I have is NOT normal.  Normal for me, I guess.  Man this is confusing.  I write whatever pops in my head sometimes.

My pain nurse just phoned.   She’s going to talk to the doctor about switching me from diladid to morphine.  She said he “doesn’t like change” but if the diladid isn’t working….I mean, I can understand him not wanting to change for no reason other than to “try it” but that isn’t the case.  I do like both of them a lot so I don’t want to judge.  She’s also not sending me a script for more patches until she talks to him.  I only have two left, and one I use today….so that gives me six days to get it in my hands.  Given what happened last time, I hope she sends it today or tomorrow.  Yikes.

Warning Bells

I slept better the last two nights, thankfully.   I feel frightened much of the time though.  When I’m awake, that is.   It’s funny….my brother and his wife were in Spain for three weeks and as it happens, so was a good friend of mine.  She just got back, and they are on the way.  My nephew is in Viet Nam studying for three months.  Just got some great pics from him via my brother and his wife, who forwarded it to me.  And a good friend of mine just got back from a week in New York with her husband.

I think about how house bound (couch bound) I am and wonder why I don’t feel anything about it anymore.  I have always been happy for friends and family when good things go there way; and of course, they have challenges as well.  And comparing is useless and unfair.  No one but the person experiencing their challenge knows how hard it is.  Sometimes, a friend will call to tell me they hurt themselves or their in pain from something, and they’ll think “Sherri has to deal with this every single day”   Well, every single minute is closer to the truth, but it’s gratifying to know that people can be aware of my particular challenge.

It has been unseasonably beautiful in Seattle, and not being able to enjoy it has been hard.  I do have a great view of the sky and trees and my wind chimes from my couch.  My couch.  You know that message you get with an email that reads “Sent from my iPhone?   I got so sick of seeing that….knowing whoever sent it was out and about (and I get them all the time) that I finally wrote “Sent from my iCouch” as part of my signature.  Only two people even noticed.

Oliver is improving; being his grumpy old self.  But he had a post op appointment Friday and the vet, whom I adore, said it was already healed (his gums).  Of course, he still has the swatch of missing fur on his forepaw, but it will grow back.

In the meantime, my dad sent Oliver a get well card…it had a picture of puppies on the front.  He wrote: “Hope you feel better, sorry about the puppies” I almost wet myself laughing.  He’s such a darling, my dad.  I love him so much.  And he is challenged physically too (spinal stenosis) and hurts all the time.  But he pushes himself to go out and about.  I wish he’d get help, but other than the cleaning lady, he claims he doesn’t need it.  One has to let it go.

If I hadn’t set up DSHS and Medicaid when I did, I would have been in deep doo doo, because there is so little I can do without excruciating pain.  It was so hard setting it up; no one could help me with that part, I just had to do it.  But if warning bells are going off in your head about getting help, GET THE HELP. The hardest part was admitting it.

Blessings

A Fun Tune  - Betty Hutton version more passionate than Bjork's, I think.

Same Old

I started taking fish oil and Tylenol for the discomfort of withdrawal and it seems to be working.   At least, I slept better the last two nights, though not for as long as I need to sleep.  Baby steps, right?

I am okay pain wise as long as I lay flat, but the minute I start to do anything, like go to the vet or the grocery store, I’m in horrible pain.  We are still “tweaking” but they say they will not up the fentanyl.  I do take my breakthrough med but it’s really not doing much but makes me constipated.

Must take Oliver in this morning for his one week post-operative checkup.  I thought I could cancel it because of his emergency trip after his tooth extraction, but they said no, it needs to be today.  So Pam will help me.  In fact, I may send her there alone, but I’m not sure she’ll find her way, even though we have been there twice.

I like her a lot, but she gets flaky and it seems to be getting worse.  I thought at first that it was just the newness, but it’s been two months.  She works like a dog and I appreciate all that she does around here, but she does weird stuff like telling me she needs to leave early just before she wants to go, rather than giving me the heads up beforehand.  We talked about it, and hopefully it won’t happen again.  The truth is, no matter who I get, there will be problems because we are all human.  Maybe I could get a non-human to help me.

The constipation is still an issue, though I seem to be able to move it along by using all my usual tricks.  Just not yesterday and so far, not today….but my stomach is growling and I ate like a banshee yesterday so I definitely need to evacuate.  And I gained more weight!!!!  Yes!!!!  I’m up to104 now….it’s working out to be a little bit short of my goal of a pound a week, but I’ll take it!

My eyes are starting to give me a hard time; can’t read as much as I use to.  I need to see the eye doctor soon.

One of my favorites but I couldn't find Aaron Neville's version

Withdrawal Back Big Time

I wrote earlier that getting off methadone "can be done" and it can...but my insomnia and muscle twitching is so severe right now I can't sleep (again).  Sleeping aids don't work, and I took my breakthrough pain med (which they told me to do) diladid and it's not helping.  I feel like I am literally "jumping out of my skin".  I've been online which I know is a no no.  But I found something interesting.  I have felt "okay" while going down...some symptoms, not many...but I just read that it can take a week before they START appearing because of the half life of methadone.  Then, it can take six months before they stop.  But I take other narcotics which should alleviate these symptoms but they don't.

I slept last night so I thought I was over the hump but I realize now it's only been less than a week since I am completely off it and the fentanyl is not picking up the slack.  These damn tumors hurt so much I just want to die again.  And I'll never be free from the narcotics that are killing me (but not fast enough).

Sorry...writing this in the middle of the night....I'm losing it tonight.  Clearly, I jumped the gun thinking I was 'done' with the methadone.

Don't use this drug for pain if you can help it...not that any others are better.....

New:  Spoke with my pain nurse in the a.m.  She told me to increase the diladid and take two before bed.  And Tylenol, for the cramping.

It Can Be Done!!

After yesterday’s post, I thought I’d write one that’s a bit more positive and may give someone out there some hope about pain meds.

I am officially off the methadone!!  I took my last one on Friday, which was a day earlier than planned, but I felt up for it.  I was a bit nervous feeling and I must mention, I’ve had insomnia for several weeks, but I’m positive it was because of the withdrawal.  Last night, blessedly, I slept.  I had left a message for my pain doc for some temporary sleep meds, but I already take anti-anxiety med so they called this morning and said no.  Then I said I slept last night and they were thrilled.

It’s true I am now on fentanyl (patches) and my breakthrough medication, but I was in such horrible shape just five weeks ago, I don’t think I’d be here (truly) to tell the tale if I hadn’t taken action.  They informed me that very few of their patients are on Fentanyl.  I asked her why.  She said I was a good candidate because she knows how conservative and responsible I am with these drugs (I truly am…..to the point of it causing her (my nurse) to want to strangle me occasionally.  I can’t help it; the constipation drives me nuts.

Right now I still can’t go out much because of the pain.  It’s now about a 6 or 7 on the 1-10 scale (when it gets bad) and stays at about a 5 if I lay flat.  But I need to go out occasionally….I still have help with that, doctor appointments and cleaning.  Don’t know if that will ever change.  The point is:

It can be done!!!  And, the bonus?  I am much, much calmer.  Everyone has noticed.  When people get upset with me, I remain calm.  When a bill is wrong, I remain calm....etc, etc.  Very new experience for me....well, new from the last 10 years....before the methadone I was calm too.